It’s a glorious, warm Sunday afternoon. So naturally, my body has decided to be a jerk. I would love to go out for a wander, even up the street and back but my hips and ankles feel so unreliable today and everything is already so sore that a fall would ruin me. Gaaaah. I’ve found that when my hands feel absolutely destroyed for no reason that my ankles usually can’t be relied upon. I think it’s hormonal. I’ll have to make do with sitting in the flat in my PJs with the window open, listening to J and his brother play Magic the Gathering! I hate the days where the simple act of lying down to sleep strains my joints and muscles – there is no way to win this battle.
I signed up to Ehlers-Danlos Support UK a while ago. For £15 a year you get access to LOADS of information that you can hand to your ungrateful GP who won’t even look at it – but at least you can then write in your complaint to the NHS that you supplied them with information that they dismissed. It makes me hulk-smashingly angry that I have to constantly prove TO DOCTORS that my medical condition is real or that my current complaint is linked to it. Anyway, all of this arrived in the post! It is amazing. It is real, material literature that shows that my condition is a real, recognised one. Anyone can find a page on the internet to “prove” a medical belief but this is a real, professional charity. Surely people have to accept it?
I also ordered a couple of t-shirts in the hope that they remind me at times of depression that my pain is from a connective tissue disorder that I did not choose to have and can’t do anything about. It might also make me smile a bit 🙂 I’ll also look super cook at meet-ups run by the charity.
Anyway, typing hurts, so blogging will have to wait. Hope everyone is having a good weekend and isn’t too stressed about impeding Game of Thrones mind-fuckery!